Thursday 12 November 2009

What is it like to be me?


''How odd is his voice, how odd his manner of speaking and his way of moving. It is no surprise, therefore, that this boy also lacks understanding of other people's expressions and cannot react to them appropriately.'' (Hans Asperger, 1944).

When I tell people that I have Asperger Syndrome, they react differently. Some ask what it means (by which, presumably, they mean what the symptoms are and whether or not they have it, or it is contagious), some either stare blankly at me or look away or downwards, whatever the implications of this reaction may or may not be; others look at me as if to say: ''I know what you are,'' in the most condescending fashion. Confessedly, when I first heard the term said of me, I initially thought it incorrect - how could anything possibly be wrong with me (of all people) - it was everyone else who was wrong. When I went to a Child Guidance Clinic (after a referral from my Primary School for disruptive behaviour), my hippy therapist (that is how my father described them, by which he meant that they were all politically liberal and correct) wrote that I was ''living in a bubble.'' I have thought about this phrase almost constantly since I first saw it on my medical records three years ago, and I am yet to determine whether it is especially profound or stupid. Maybe Time will tell. Time, if anyone remembers Riddles in the Dark, is the destroyer of all things, the eater of worlds.

When I first received my diagnosis (in hindsight, I cannot believe that I condescended to be treated as a laboratory hamster for months), it was rather upsetting, and my head spun with conflicting thoughts and feelings; it was very loud, almost as if there were a war of sentiments and notions going on in my head. I get a similar feeling when more than one person is talking to me at the same time. I felt as though I didn't seem to quite fit in anywhere; I was not quite far along the Autism Spectrum to be classically Autistic; Asperger Syndrome sounded like a road that went nowhere, a window into nothing (like the Eye of Sauron), or a stream that went into the sand. It seemed like a magnet, pulling and pulling at my mind, pulling me into the realms of solitary wandering and pain, seeing the world through the bars of a cage, a prison that one could not see or feel, or escape from. I could only look from a distance at the relationships and friendships of other people, which I wanted to be part of, and I just felt alone, and bitter. For a long while, I belied reality with the notion that this was what I wanted, the other children were naturally less intelligent than I, less artistic, less sensitive to music and art, they all seemed to be more interested in frivolity than thinking, which I liked to do best. Boys were especially disgusting, and I had more girlfriends in Primary school - maybe because they were more like me than the boys were. Girls at any rate were sensitive to things with a particular quality of beauty, such as art. Among boys, any aesthetic appreciation was scoffed at as ''gay.'' I certainly cannot explain my preferences, even if I would. I was alone, perforce and by choice, a lot of the time, but it was a reluctant choice or acceptance. Perhaps it was a case of ''beware of wishing for your heart's true desire, lest you end by getting it.''

I often find that by writing things like this I am trying to articulate something very personal but incomprehensible. I hope these posts are at least intelligible and readable. Last night when I said that I was in pain and in dire want of personal literature, I meant it sincerely. But, most of my books have been read again and again, and like Tolkien and Lewis in the early 1940s, I have decided that not enough literature to my personal taste exists - so I shall have to compose some myself. Perhaps this is why, in a moment of temporary insanity, I proposed to the others my vague idea of writing a blog. Names for the blog were suggested - amusingly Mac proposed ''Attack of the Orcs'' - I thought then ''it won't be a blog about writers of The Tablet'' but I thought better of actually saying that. This is a Catholic blog, uncompromisingly so, but it has also become an eclectic blog, and I hope readers enjoy it.

As is my wont, I have strayed from the topic. Sometimes I feel that I am rather useless. I little sympathise with others who have Asperger Syndrome. They mostly seem to be great mathematicians or scientists or engineers. As my father said of me once, ''you don't even know how to change a light bulb.'' I suppose being entirely impractical does in fact make me useless. What can I say? My mind is rather peculiar. I suppose to a lot of people I am that rather odd young man who knows a lot about Tolkien. But what possible use is knowledge of Tolkien? The other day, a young boy asked me why, at 21, I hadn't moved out, married and had my own house. I suppose the answer to that, other than the obvious pecuniary reasons, is that I simply can't. I am not sure that I could live on my own, so when I said in answer to another question (why I wasn't married) that ''I just want someone to look after me,'' I was actually being serious.

With most of my friends, I have little in common beyond the most obvious things (faith, biological gender etc), and I am yet to meet someone with as much of a knowledge of Tolkien as myself. Someone I work with told me, when he saw that I was reading The Book of Lost Tales, that he had read The Children of Húrin, but he happens to be a non-believer, and worse, one of those vegetarians, so what little we had to talk about suddenly dried up. Am I too dismissive?

One of the most tragic things about having Asperger Syndrome is my impaired Theory of Mind abilities. Theory of Mind is a psychological term which means the ability to recognize and understand the thoughts, beliefs, desires and intentions of other people in order to make sense of their behaviour and predict what they are going to do next. My mother often says, in other words, that I can't ''walk in other people's shoes.'' This is not always a bad thing - for example, I am not interested in how Protestants or other heathens see things because they are irretrievably wrong. But it is tragic when someone is upset and I lack the ability to console them. All I see is that someone is upset, and I am expected to do something, or say something, but I am altogether inept. When trying to explain to a young boy how declensions and conjugations work in Latin once, it just would not sink in, and I said to him ''it's not difficult; I can understand it, why can't you?'' My mother then told me that people have minds different to my own. In hindsight, I don't think I understood that until I was about 8 years old.

So the question: what is it like to be me? Now that I think of it, I can't answer that question, because I don't know myself. Having Asperger Syndrome can have personal and intellectual benefits, but these are always at the clear expense of something fundamental to the human person. It's almost like being forced to carry, or drag, an immense weight that hinders me in the course through life. I am, therefore, naturally melancholic, and I suppose because of all of the above, I am doomed to walk through this world alone, to my life's end.

By the way, I actually think that my voice is beautifully deep and melodious, whatever Hans Asperger may have said! The above photo is of my favourite flower, the beautiful Purple Saxifrage.

3 comments:

  1. As I've said before, I really appreciate your posts on Asperger's Syndrome. Having a family member who also has Asperger's Syndrome but never ever talks about it, I find it very helpful to get a glimmer of how it must be for someone with this condition. You write very well and I wish I could articulate my thoughts as well as you do.
    I like the eclectic nature of your blog too. On my little blog I like the freedom to write about anything that takes my fancy no matter how frivolous or weighty a topic. After all, I think most blogger write for themselves as much as for others.

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  2. You are fearfully and wonderfully made, and every hair on your precious head is numbered.

    Start off from those scriptural truths, and let life unfold, according to His loving plan for you.

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  3. I suppose being entirely impractical does in fact make me useless.

    I don't know about that. St. Joseph of Cupertino was about as impractical as you can get, but if he was useless, it was only from the world's point of view. And the Faith tells us that the world is not going to get the last word.

    ReplyDelete